Time Line

June 3: Topher weighs in at 1454.  He had two blood transfusions over the weekend which helped with the weight gain.  He’s also on continuous feeds of 10 ml per hour (total of 240 for the day) now that he’s off his CPAP.  He’s been off the CPAP for two days now.  So far so good!  He may need surgery for his eyes (to prevent blindness) on Sunday, we’ll find out on Friday.  He’ll need anesthetics and will be intubated again.  Hopefully he’ll be able to be extubated.  We may start over with his lung therapy (ventilator to CPAP to nasal cannulas) after his eye surgery.  Hopefully though, with the maturity of his lungs, we’ll get back to the nasal cannulas quicker this time around.

June 2: They’ve taken Topher off his CPAP and onto a Nasal Cannula. 

May 20: Topher weighs in at 1285 grams today.  They’ve increased his feeds by 3 ml, so he’s up to 21 ml Q3. They will start fortifying the breast milk to give him additional calories.  Also, his picc line was leaking yesterday, so they removed it.  Boogers are still affecting his breathing.  We witnessed an extreme brady (when the heart rate drops below 100) this evening, and it was scary.  Even Shane went into doctor mode to try to help out…

May 19: Right now, Topher is at 16 ml Q3.  His oxygen level is at 24%.  Nurse L tried to wean him to 21%, but he only handled it for 2 hours before having problems.  His current weight is 1225 grams.

May 14: Dr. G felt that Topher wasn’t gaining weight fast enough, so they started increasing his feeds at the rate of 2 ml Q3 per day. His weight is 1212 grams.

May 8: The nurses have started weaning Topher’s TPN milkshake while also increasing his breastmilk amount to 4 ml Q3.  When he gets bigger, they may completely take him off the TPN and just feed him breastmilk.  So far, he’s still using a gastric tube.  We did ask about bottle feeds, but since he’s still on his nasal c-pap, it may be challenging to try to wedge a bottle under the tubes around his nose.  There’s only so much space on his little face for all the stuff he needs. 

May 6: Moved to C-4, a part of the NICU that focuses on chronic care.  Topher is stable enough to be here, according to Shane.  Feeds are still at 2 ml Q3.  He seems to be handling the breastmilk well after the first few days.  He’s still on TPN (the nutritional “milkshake”).  I don’t know when they’ll wean him off of that.  He IV is removed, but he still has a PIC line in for any sort of access they may need in the future.

May 4: Feeds increased to 2 ml Q3 for 12 hours and then to be increased to 3 ml Q3 in the next 12 hours. NOW he’s over 1100 grams.

May 3: Started his gastric feeds on breastmilk to test his stomach and small intestine.  Starting at 1 ml Q3 (every 3 hours) for the first 24 hours. Today is also Michigan Grandpa’s birthday.

May 2: Okay, apparently I jumped too far ahead for his weight.  He is NOT 1100 grams…  He’s almost there (1071 g).  But the docs ARE using 1100 as his base weight to calculate how much calories to give him.  He’s still on his c-pap and still off the ventilator (yay!).  Here are some more milestones to wait for: at 1700 grams Topher gets to wear CLOTHES!  And at 1900 grams he’ll be able to sleep in an open crib instead of his incubator.  Cool, huh?  Also, he’s finally pooped into his little bag, so they may start feeding him breastmilk (through his gastric tube) in the next day or two.

April 30: Topher weighs in at 1100 grams!  The docs want to use this as his base weight and go from here.  Still waiting for poop to show up in his colostomy before they start feeding him breast milk into his gastric tube.  He’s still too young to suck on a bottle or nurse, but they’re helping him develop these muscles by giving him a (really teeny!) pacifier.  It’s about the size of my pinky!  I was worried about developing a binky habit, but the nurses (both the NICU nurse and the retired one from church) reassured me that he was too young to have habits.

April 29: Topher is extubated and breathing on his own with the help of a bubble c-pap that provides oxygen through tubes into his nose.

April 25: Topher is now over 1000 grams!  So here’s a better explanation of April 24: Topher really didn’t have a spare pocket.  It just looked like one on his X-ray.  Better yet: really it was a cardiologist trying to explain to the non-medical person what could be a possibility but nothing would be definite until his surgery.  Topher underwent abdominal surgery today to do an exploratory Laperotomy (sp?).  What the surgeons found was that Topher did have a perforated bowel and NEC (see March 26) in his small intestine (right before his large intestine), but the stool was contained within his interstitial area and there was no sign of infection or other dead bowel (praise God!).  The surgeons also removed the distended bowel (only 10 cm) where the barium had collected from his upper GI study.  Oh, and his incision was above his belly button going left to right.  He now has an ostemy (he’ll be pooping into a bag) and a mucus fistula where they will feed into his large intestine.  They will put him back together again before he goes home.  They’ve put him into a different bed space to recover.  He’s still in the NICU, but this pod (room) is much larger with more babies and more sounds (more beeps and crying) as compared to his last location.

April 24: (fast forward to today; I’ll fill in the rest of April later): Topher underwent a second Barium Contrast Study in his Upper GI tract on Tuesday (April 22) and the study showed that he has a spare “pocket” in his small intestine where the barium has been collecting over the fast 2 days.  This doesn’t seem to be anything that can heal on its own, so the only option is SURGERY to remove the pocket.  Unfortunately, the surgical procedure won’t be as simple as his heart procedure.  The surgeons will have to cut him open: (according to the Cardiologist) the incision is supposed to be from his sternum down toward his belly button.  Now the debate is: WHEN should it be done?  Do they let him grow larger from his TPN (IV solution of lipids, sugars and amino acids) until he has liver problems, which by then he will no longer be a candidate for surgery if he has an infection from his TPN…  Or should they do the surgery asap so that he can heal sooner and start his feeds on breast milk (which is better than the TPN overall)?  I asked Shane if we, as Topher’s parents, have any input; he said that the docs will do whatever is in Topher’s best interest.  There’s no right answer to this.  This is what we call “the art of medicine.” 

April 22: Topher has upper GI barium study.  Clara gets to hold him while Nurse A zeroes the scale to weigh him.

April 21: Clara changes Topher’s diaper fir the first time.

April 20: Clara’s birthday; got to “kangaroo” Topher!

April 18: Topher has PIE (no, not the delicious fruity kind; “SHARE the pie, don’t eat the pie!” is a new favorite line of Toby’s from “Word World”)…  Back to the medical PIE (Pulmonary Interstitial Emphysema): his right lung got over inflated (we think the ventillator tube was offset) and squished the left lung which then collapsed.  To fix this, the docs collapse both lungs until they reinflate.  The PIE pushes the Barium Study of his upper GI until next week.

April17: Topher is one month old and we both got to hold him for the first time since he was born.  Shane calls me in the middle of the day to brag: they let him change Topher’s diaper!  And when Toby and I walked into the NICU, Shane has Topher and LOTS of blankets in his arms.  Then I get to hold him!  What a treat! 

April 16: Topher has a barium enema to see if there are any problems with his colon; docs find that he has a “micro colon” because he really hasn’t been using it since he was born, so there is no muscle development.

April 8: Topher starts sleeping on belly because he breathes easier that way.  Clara’s concerned about SIDS, but Shane reminds her that he has a ventilator breathing for him should he stop breathing.

April 1: Shane goes back to work.  Clara off the pain meds.

March 26: late night (near midnight) we get a phone call at home: Topher has a perforated bowel (pnumoperiteneum).  We think the worst: NEC (necrosis of bowel); surgeons would have to go in and remove all dead tissue and Topher would not survive…  But Dr. ___ wants to be conservative and puts a drain in his side to see what comes out.  Thankfully there’s no stool or other signs of NEC, just interstitial fluid and some air!  Docs think if he did perf, then it has healed on its own. WHEW!

March 25: Topher has PDA Ligation (NOT open heart surgery; just a slit by his left armpit) by Dr. G (surgeon) and Dr. S (anesthesiologist).  Shane and Clara decide to keep Topher at Children’s should he need more procedures.  Tranfers are too stressful for him.  Plus, the Children’s NICU is Toby-friendly: he’s allowed to see Topher as long as he doesn’t have a fever and washes his hands.  At OSU, only children over 4 are allowed in the NICU.  At OSU, we saw a little girl (maybe 3?) crying outside because she wasn’t allowed in.  More pluses: Children’s NICU is more spacious; OSU’s was more like a sardine can (even maneuvering a wheelchair through was challenging). Surgery a success!

March 24: Topher is transferred to Nationwide Children’s Hospital for heart problem; PDA enlarged after 2 regimens of medication to help close it.

March 23: Easter Sunday.  Go to church.  Topher’s lab numbers don’t look too great… 

March 20-22: Toby & Bailey (dog) in Michigan with grandparents.

March 18-21: Clara and Shane stay at Hospital to recover from surgery while Toby & Bailey stay home with Grandparents.  They visit Topher in NICU 2-3 times a day.  Topher has big scab on belly; his skin is so fragile…  Whenever they drew blood, they would also give him a tranfusion to make up the loss; that’s how small and little volume of blood he has. Meanwhile, on the Toby-front: OSU has a Wendy’s as well as a regular cafeteria…  Wendy’s makes ROOTBEER FLOATS!  Toby has had at least 2 (to my knowledge) the week we were in the hospital recovering.

March 17: Early am, Clara has the chills & bad headache and asks for blankets & Tylenol; receives 6 blankets and pills and then finally warms up. 8 a.m. Clara has a 101.9 fever.  Shane and Toby come.  Clara’s OB, Dr. T, comes to check up on her; high risk OB, Dr. __ comes in for consult.  Neonatologist, Dr. __ also comes in to give opinion as Baby is exactly at 23 weeks gestational age (22 is not considered viable, 24 is safer, 23 very gray area!).  Options are: more blood draws, amniocentesis (what are the risks?) to check up on baby, C-section vs vaginal delivery…?  Between 8:45 a.m. to 9:45 a.m., Clara has bad back aches in lower back (unbeknownst to her: labor pains!).  9:50 a.m. Clara gets another exam: she’s fully dilated at 10 cm and baby is breach; vaginal delivery no longer an option, Clara gets prepped for emergency C-section.  10:18 a.m. Topher born! Shane very frantic, Toby going a little nuts…  Thankfully the hospital Chaplain and Shane’s program coordinator are there to help out with Toby.  Michigan Grandparents come down after noon and take Toby home.  Shane takes the rest of March off from work to be with Clara, Toby and Topher. Cultures grow out positive for Strep B. Diagnosis: Clara has acute choreoamnio… which causes spontaneous labor.

March 16 (Palm Sunday; Toby’s first Communion): Clara, Shane & Toby go to OSU Med Ctr to rule out discharge as possible amniotic fluid. Upon exam, Clara is 3 cm dilated and stays overnight for observation and antibiotics. Blood is drawn for cultures.  Shane and Toby go home.  Clara makes lists in head of what DVDs to watch in case she has to go through her last trimester on bed rest…

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5 Responses so far »

  1. 1

    caleb chu said,

    Hi Shane and Clara :),
    Wow the earliest premie I saw was a 26 week-old and she had quite an amazing journey as you may call it. Now a 23 week-er is absolutely amazing and a miracle from Dad upstairs :). I wish and pray for the growth, health and strength of Topher as he has his first big journey his life on this earth. I guess he’ll just have to experience the difficulties of life a little sooner than most :). I pray you three (inlcuding Toby of course) weather through this time of faith with flying colors as well. You are all in our prayers!

    Blessings,
    Caleb

  2. 2

    Ellie said,

    Hi Shane, Clara, and double Ts (Toby & Topher):

    Thanks for sharing your experiences thus far. It brings tears of sadness to know that Topher has endured so much, yet tears of joy also fall because of the miracles our Father has already done and will do. You are all in my prayers. God will give you strength.

    With Love & Hugs,
    Ellie xoxo

  3. 3

    Teddy said,

    Hey Clara and Shane (and Toby and Topher),

    Praise God for your willingness to share your difficult times and your good times. Thanks for letting us know how we can pray for you and what’s going on in Topher’s life, and your lives. you guys are amazing! We’ll keep praying for you.

    Ted and Mi (and Allie)

  4. 4

    Jocelyn said,

    Dear Clara and Shane,

    I can not imagine anything more stressful than worrying about your own child and just waiting. Topher is blessed to have such loving and dedicated parents. We will continue to pray that you will feel God’s strength with you are you continue on this journey.

    Love,
    Jocelyn

  5. 5

    Jeannette So said,

    Thank you for sharing, so we can pray for you all (C, S, T &T).
    It’s obvious that Topher is a strong fighter. I bet he’ll grow up to be a healthy, strong-minded man.
    Clara: You have done an excellent job in explaining all those medical terms and procedures.
    Thrive!
    Love in Him,
    Jeannette


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